It’s funny, the patterns you see, when looking back. Almost exactly two years ago, I wrote a blog post about how not everything is a fight. Even though they were absolutely right on this count, the person who inspired that post had their own agenda, their own reasons to grind me down. In response to their comments – some that were accurate and some that were cruel – I tried to buckle down, to keep quiet, to not speak out about anything; in effect, I tried to become a quiet little mouse who never uttered a word as it came to perceptions of my blindness. I lost part of myself in the process. I believed most of what this person said – much of it to my detriment – and it took me years to realize that they could be right about one thing and yet still be very very wrong about everything else.

Somewhere along the way, I’ve met some amazing people who’ve helped me become a strong and forceful disabilities advocate. They are compelling and fearless and take no prisoners. I owe a great deal to them, for their willingness to stand up for people with a wide variety of disabilities – not just the unique challenges and triumphs their own disability(ies) present. They’ve made me feel welcome, and since then have encouraged me to share my perspective and kindly corrected me when I made mistakes that hurt them.
And yet, in between those two extremes, is the middle of the road. In many ways, I’ve found myself swerving from one extreme to the other, using bravado and force to overcompensate for the pain of passivity, of having my face shoved into the shoulder of the road.
Recently – and it’s not the first time – a loved one told me that I shouldn’t be upset when someone is surprised that I hold the job I do, and chooses to express this shock with sickly-sweet tones that one usually only hears directed at very young children. This was on top of a bunch of other little things that made the whole day just go sideways, even if nothing itself was earth-shakingly bad. To be honest, I’m still reeling from the comment itself, and the later understanding that I’ve been overloading a loved one with too-frequent complaints about how people respond to my blindness. They have the luxury to decide whether or not to hear about it; but it is such an integral and frequent part of my day that I don’t think twice about sharing it. In the moment of impact, it just didn’t feel fair.

But is it really unfair when I am expecting them to help carry my own burden for me when they’re not willing or able to do so on a regular basis? If I expect understanding from others, should I not offer it in return?

I chose to take that hurtful comment and seek out some self-reflection with the help of trusted friends. As of right now, however, I have no easy answers.
Have I been angry?

Yes.

Have I had cause to be angry?

Yes.

Do I expect others to be angry on my behalf?

If I’m honest, yes. Because I highly doubt they’d put up and shut up about being denied opportunities, infantilized, bodily manipulated, and underestimated on a very frequent basis.

Is that reasonable?

I don’t know.

Is it reasonable for friends and family to not want to hear about it all anymore?

I don’t know. I can’t choose to ignore it all, but I can choose when and with whom I open up these dialogues. It is my responsibility to be considerate and not over-burden loved ones with my own emotional baggage, no matter how reasonable and justified the baggage is. But it is also theirs to remember that no one likes their bruised feelings and interpretation of events dismissed out of hand, especially when they’re releasing some pent-up tension, as we all do.

Is it understandable for frustrations to boil over into a lack of empathy, cruelty and harsh words?

Yes, on both sides of the issue.

So what does this mean for me?

I don’t know.

 

My blog May look different in the coming weeks or months. Maybe I will take a break. Maybe I’ll do something radical and remove myself from disability spaces. Maybe I’ll do none of these things. Maybe I’ll do all of them.

I doubt I will ever be content sitting on the sidelines long-term, because allowing others to speak for me will limit my own opportunities, and those for the people who come behind me. But I can’t keep swerving between hostile aggression and docile compliance, because neither accomplishes anything. And I can’t keep coasting through, keeping my head down, allowing my presence alone to be an example, because where I am and what I do are only part of my story.

So I’m going back to the proverbial “driver’s manual”, to figure out the best advocacy “vehicle” for myself and my loved ones. Maybe I change what I say and how I say it. Maybe I choose my battles more carefully. Maybe I emotionally check in with my friends and family to see if they’re in a space to carry a particular burden with me. Maybe I take some time out to just exist, particularly on days where everything just goes sideways and I wouldn’t respond objectively anyway. Maybe I have all the tools I need, but I need to teach myself how best to use them. I’m not doing anything drastic, nor will I suddenly become a door mat.

But I am so very tired, on all fronts.

And maybe for now – on this leg of my journey – it’s time for someone else to take the wheel for me.